Posts: 25

Topic: meeting with surgeon again

I woke up today all nervous about finding out the results of yesterday's CT scan. Checked my email before I left and there's an email from MSKCC. Wondering if it was another bill, I timidly opened it, and saw that I had a new appt. acheduled. So I clicked, and there is an appt. set up with Dr. Fong!! I was so excited! That meant, to me, that the scan was good!! Right???So I wait the whole way in to NYC and then 2 hours past my appt. time to see Dr. Kemeny. She confirmed the scan was mostly good. The tumor is about the same size but shows some necrosis. The GREAT news is that the nodes are about 1/2 the size of pre-radiation, with lots of signs of necrosis!!I told her I assumed it was good news when I saw the appt. for Dr. F. She said she would not recommend surgery yet She wants to wait to see how the radiation continues to affect the areas. The concern I have is the tumor didn't respond that well to the radiation. Maybe I should talk to her about going back on Xeloda? It responded to that, and if the nodes are shrinking, maybe a double blast will do good. Something I need to think about. Getting that tumor back down is a must...But the news was good, so since I don't get to post here often, I'm grabbing the excuse!!!

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: meeting with surgeon again

November 2 is the next scan as of right now. With follow ups on Nov. 5.We'll see what Dr. F. says on Monday.I thought of something else we could possibly do: the silly pump is still in me and still not being used. So maybe we can throw some chemo in there and get chemo directly to the tumor and shrink that while we are waiting... Have to ask that, too.

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: meeting with surgeon again

Hi Kris,

Great stuff! Loving seeing you posting on this part of the site and looking forward to seeing you post again here after your next scan as well!!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: meeting with surgeon again

Today's the day. I wasn't nervous until last night when I tried to go to sleep. I figure all he can say is yes or no and explain... I'm ready either way. And I thought I was handling it so well... but now the freakies are coming out!

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: meeting with surgeon again

Well, it didn't go so well. No surgery, at least not until January or February. If then.The thing I love/don't love most about Dr. Fong is he tells it straight. So here's the scoop:The nodes ARE dying. He thinks it looks like they are dying from the inside, too, which is GREAT news.The bad news:The tumor isn't reacting as well to the radiation.The unknown news: the radiation will continue to work at some level for the next 6-8 months. The lymph nodes are finally responding to something, so that's good. How well they continue to respond is unknown, but he's optimistic.The tumor, on the other hand, is an unknown quantity. Will it start responding to the radiation? Will it start growing again?? Will Nov. 2 be too long to wait?I DID say that I thought Dr. K was not being aggressive enough. Dr. F. said she is, but I have to understand that the liver can only take so much... he agrees we should wait and then may have to hit the tumor with chemo.He is no longer talking resection only. Now he is talking (something) oblation. I remembered he had mentioned it at our first meeting, but the tumor was too large. He said it is still large, but it is smaller than it was. So it is possible that oblation will work.Dr. F. said we don't want to kill the liver with too much at once. But FUDR thru the pump in Nov. if necessary should work. Shrink the tumor a little and pray the nodes die completely.He also said if we are too aggressive and misuse the chemos, they might not work and then I'm out of options. Also, if the nodes start to grow again, I might be out of options.Like I said, I love that he doesn't pull punches but it's pretty upsetting to hear some of it.I hope this wasn't too disjointed. Trying to remember everything and not overreact too much to what he said... it's tough. i HATE CANCER!!

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: meeting with surgeon again

Kris you may not have the answers you wanted BUT Dr. Fong seems to have lots of options and that outweighs 'bad' news. I can only imagine how you feel but please try to stay hopeful and positive with all these options. You never know how strong you are until "strong" is the only choice you have! Tough times never last, tough people do! You have no idea how much love is pouring out to you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: meeting with surgeon again

Kris,

You didn't hear what you wanted to hear which was resection and I think that was a huge disappointment to you.I think your doctors are being cautious, which is good. They wouldn't let you go for a long time without anything if they thought things weren't looking better. I am glad they aren't throwing too much at you and making you sick. You have been having so much fun lately. Keep having fun and Nov. 2 will be here before you know it. You are always in my prayers.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: meeting with surgeon again

Kris, I am so sorry you did not get the news you wanted today. I am glad that your doctor has other options for treatment. What about a second opinion with another liver surgeon ? Maybe you already did this but I can't remember. I will continue to pray for that resection for you.Hugs, Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: meeting with surgeon again

Kris....in all the news we wanted to hear, but Dr. Fong did not mention anything about increase of tumor size or progression of disease. To me that is really good news. I will continue to stay hopeful and I will continue to send positive vibes your way. Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: meeting with surgeon again

I read lots of good news in that too, Kris! I think you have a great team working for you and you are responding well, considering the nature of the beast! I'm with you on "I HATE CANCER!" Keep kicking butt!! Lots of hugs. Nancy

Re: meeting with surgeon again

I met with Fox Chase's radiological oncologist (the one in charge of my radiation) yesterday...he never received the images from my CY scan from Sloan But I brought my own printout of the scan, thankfully, so he could read that. Without being able to see images, he said he is hopeful. The nodes are responding well, and the tumor is large, so it will respond slower and differently than the nodes.... he said to not necessarily look for shrinkage with the tumor, but rather look for scarring and such.So now I'm more hopeful again...Now all I have to do soon is set up that appt. for cataract surgery...... UGH!

KrisJ"Don't just have minutes in the day; have moments in time."Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.